Friday, October 7th 2011 8AM - 6PM
Helpful Interventions for Children with Fragile X Syndrome, Autism and other Neurodevelopment Disorders
Date and Time:
Friday, October 7th
8AM - 6PM
Burke Centre Woods Community Center
10100 Wards Grove Circle
Burke, Virginia 22015
Who should attend?
Parents, Families, Teachers, Therapist and other providers who care for and work with children and adults with Fragile X, Autism or other Neurodevelopment disorders.
Limited space available and pre-registration is required.
There is no childcare available.
How much does it cost?
$70 per person
Registration Form above - .pdf
Certificates of Attendance will be available on request.
7:30-8 Registration & Coffee
8-8:15 Intro and Welcome
8:15- 9:15 What are FXS and autism? Characteristics, medical Management, recent discoveries and treatments. (Dr. Lachiewicz)
9:15 - 9:30 Break
9:30 - 11:45 Day to Day Intervention Strategies: working with hyperarousal and anxiety, fostering self-regulation and teaching to specific learning styles. (S.Scharfenaker & T.Murnan)
11:45-12:45 Lunch (on site)
12:45-1:45 Continued: Day to Day Intervention Strategies (S.Scharfenaker & T.Murnan)
1:45 -2:30 Research and Clinics - Why They’re Important. (W. Kaufmann)
2:45 - 4:00 Life in Mrs. Rogers Neighborhood (C.Rogers)
4-4:30 Seaside Therapeutics / Clincial Trials (B. Rathmell)
4:30-5 Case Study Panel (all speakers)
5:00-6:00 Q and A with Panel
Sarah Scharfenaker, MA, CCC-SLP, known as “Mouse”, is co-founder of Developmental FX. She has worked in the fields of Fragile X Syndrome and neurodevelopmental disorders for more than 20 years. She provided speech pathology services to the Denver Fragile X Treatment and Research Center at The Children’s Hospital in Denver, Colorado, and accompanied Dr. Randi Hagerman to the UC Davis M.I.N.D. Institute to initiate its program. Mouse has published many chapters and articles on intervention for Fragile X. She consults and lectures on Fragile X treatment both nationally and internationally.
Tracy Murnan Stackhouse, MA, OTR is co-founder of the Developmental FX in Denver, Colorado. She is a leading pediatric occupational therapist involved in clinical treatment, research, mentoring, and training regarding OT intervention and neurodevelopmental disorders, especially Fragile X Syndrome and autism. Tracy has a master’s degree in developmental psychology. She is NDT trained, SIPT Certified. Tracy has written several book chapters on sensory integration and neurodevelopmental disorders, and teaches nationally and internationally on sensory integration, fragile X and related topics.
Ave M. Lachiewicz, M.D.is a board certified developmental-behavioral pediatrician. She works in the pediatrics department at Duke University Medical Center. She trained at the University of Minnesota in Minneapolis and at Albert Einstein Affiliated Programs in New York City. She completed a clinical fellowship in developmental medicine and clinical genetics and metabolism at the University of North Carolina in Chapel Hill. Dr. Lachiewicz primarily works with children, who have intellectual disabilities. She also works with children, who have behavior problems and require medication to manage their behaviors. She tries to make sure that her patients are receiving adequate treatments for their specific learning challenges. Dr. Lachiewicz and her colleagues, Gail A. Spiridigliozzi, PhD; Allyn McConkie-Rosell PhD; Pamela Brode; and Deby Burgess, started the Duke Fragile X Clinic in approximately 1989. This clinic has had support from numerous civic groups in our state. The Duke Fragile X Clinic is part of the Fragile X Consortium. She has recently become a member of the National Fragile X Foundation’s Scientific and Clinical Advisory Committee. Dr. Lachiewicz and her colleagues have published numerous articles on fragile X syndrome, primarily documenting the clinical phenotype. The Duke Fragile X Clinic has recently been approved to become a clinical site for one of Seaside Therapeutics’ clinical trials.
Walter E. Kaufmann, M.D. is the Director of the Center for Genetic Disorders of Cognition and Behavior and of the Fragile X Clinic at Kennedy Krieger Institute - which encompasses research activities on Down Syndrome, Rett Syndrome, Fragile X Syndrome, ASD in metabolic disorders and ASD in the general population. He is also a Professor of Pathology, Neurology, Pediatrics, Psychiatry and Radiology at the Johns Hopkins University School of Medicine. Dr. Kaufmann is currently a member of the Psychiatric/General Medical Interface Study group and the Neurodevelopmental Disorders Work Group for the Diagnostic and Statistical Manual of Mental Disorders – Fifth Edition (DSM-V). He also serves as a member of the Scientific Review Board and the Medical Advisory Board for the International Rett Syndrome Foundation (IRSF) and as the Coordinator of RettSearch, the international consortium of Rett Syndrome clinical researchers. Additionally, he serves as a member of several committees and boards in the Fragile X Syndrome field: the Steering and Membership and Infrastructure (Chair) Committees of the Fragile X Clinic and Research Consortium of North American (FXCRC), the Scientific and Clinical Advisory Committee of the National Fragile X Foundation (NXFX), and the NIH-sponsored committee on Outcome Measures for clinical trials in Fragile X Syndrome.
Mrs. Cindi Rogers is the mother of 2 boys affected with fragile X syndrome and Autism, ages 20 and 22. In the mid- 90’s Cindi served as Family Liaison for the Fragile X Treatment and Research Center at Children’s Hospital in Denver, CO. She currently serves on the Board of Directors for Developmental FX in Denver, CO. She has presented her innovative strategies to families all over the world and especially in the U.S. It is her personal mission to share these strategies in hopes of generating ideas that families can implement in their own lives, while living with Fragile X Syndrome. She and her husband live and run a business in Littleton, CO. The four of them enjoy travelling the U.S. in their RV.
Barbara Rathmell, M.D. is the Senior Medical Director at Seaside Therapeutics, a pharmaceutical company focused on developing targeted treatments for autism and other neurodevelopmental disorders. She focuses on clinical operations, clinical development and medical affairs activities. Before moving to Seaside in 2008 Dr. Rathmell spent her career in the practice and instruction of Pediatrics, most recently at the University of Vermont. Dr. Rathmell completed her medical degree at Wake Forest University and Pediatric Residency at Brenner Children’s Hospital at Wake Forest Medical Center.